Despite promise, no trial yet for children with epilepsy

Nearly a year after it was first announced and nearly a month after it was deemed "imminent," there is still no medical marijuana trial for children with epilepsy in New York, angering, if not surprising, advocates for greater access of the drug to children suffering from severe epilepsy disorders.

"There is a drug that will be helpful for children with epilepsy," state health commissioner Dr. Howard Zucker said during his confirmation hearing before the Senate health committee. "Imminently, we will announce which parts of the state and different institutions will be able to apply to see if they can get the drug."

Story Continued Below

Zucker said an announcement would be made soon. That was May 5.

No announcement has been made and the health department declined to respond to a question about the drug trial.

The trial was supposed to be with G.W. Pharmaceuticals, a British company that makes epidiolex for pediatric epilepsy syndromes

The letter of intent between the state and G.W. Pharmaceuticals was signed May 31, 2014, according to The Buffalo News.

The deal was supposed to have Epidiolex available in an oil- or spray-based form to eligible children across the state who do not respond to traditional drug therapies and can suffer from hundreds of seizures in a day.

Steve Schultz, a spokesman for the pharmaceutical company, said the deal with New York remains active, and the timing of any announcement would have to be left to the state.

The endless delays have left advocates dispirited and parents of epileptic children desperate.

Missy Miller, an Atlantic Beach resident whose 15 year-old son, Oliver, suffers from refractory epilepsy, has called local law enforcement to see if there is some way she can get protection, or immunity, if she were to bring medical marijuana into her home to treat him.

"This is what New York State is forcing me to do," she said. "They are not concerned with 'imminent' because they are not watching their children die. Instead of watching my child develop, I'm watching him go backward."

Miller said she met with Zucker in Skelos' office and the commissioner seemed receptive to her—and other parents'—ideas.

They were told, she said, that a trial would commence at the beginning of 2015, then it became the spring. Now, she says, she has given up hope, and believes she was being strung along.

"Basically, they didn't want us talking to the media," she said.

The delays have frustrated legislators as well.

Last month, Assemblyman Richard Gottfried, the sponsor of the state's medical marijuana law, urged the Cuomo administration to find a way to give children access to the drug on an emergency basis.

Asked about the delays, Gottfried said, "In January 2014, the governor announced in the State of the State message that he was activating the 1980 Olivieri Law to make medical marijuana available to seriously ill patients. It’s almost a year and a half later, and still no one is getting any medication."